Friday, March 25, 2011

One Fish, Two Fish, Long Hair, Short Hair?

Remember these shoes of Gavin's?

Every time I put them on his feet, I get a little happier. It's funny how something so simple can brighten one's mood.....well this happens to me anyway. And, now I get even happier when I put them on his feet, when I also put this shirt on him as well!

Adorable, don't you think?!

One or two of our other boys wore this shirt when they were younger, but I didn't think it would fit Gavin until after he had grown out of these matching shoes. But, I tried it on him last week and it already fits him! Yay!

Can you tell this makes me happy?! :)

Last week I also decided that Gavin needed a haircut. This is always a chore, because Gavin likes his hair cut just about as much as he likes to have a bath! (NOT AT ALL!)

Here is a picture of him before the haircut:

And, here is a picture of him after the haircut:

I personally think he looks cute either way, but there are some strong opinions in our family about how some of us prefer Gavin's hair. So, I'm wondering which way do you prefer it.....Long or Short?

"Are not two sparrows sold for a copper coin? And not one of them falls to the ground apart from your Father's will. But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows." Matthew 10:29-31

Monday, March 21, 2011

Carrying a Contact...a Cartoon...a Charity...and a Cause! last post was about how empty my heart has felt ever since we found out that Gavin had suffered a stroke, and that he was likely to stay infant-like for the rest of his life. This empty feeling has not changed since I wrote that post, and this burden that I have to carry each and every day will most likely never go away.

And, my questions of why Gavin had to have this stroke may also never be answered on this side of heaven.....but, I WAS sent an e-mail recently that has me thinking a little more clearly.

Joel's aunt sent us the following true story, and it was something that I really benefited from reading! So, I thought that I would share it with all of you!

Here it is:

The Ant and the Contact Lens: (A true story)

Brenda was almost halfway to the top of the tremendous granite cliff. She was standing on a ledge where she was taking a breather during this, her first rock climb. As she rested there, the safety rope snapped against her eye and knocked out her contact lens. 'Great', she thought. 'Here I am on a rock ledge, hundreds of feet from the bottom and hundreds of feet to the top of this cliff, and now my sight is blurry.'

She looked and looked, hoping that somehow it had landed on the ledge. But it just wasn't there.

She felt the panic rising in her, so she began praying. She prayed for calm, and she prayed that she may find her contact lens.

When she got to the top, a friend examined her eye and her clothing for the lens, but it was not to be found. Although she was calm now that she was at the top, she was saddened because she could not clearly see across the range of mountains. She thought of the bible verse 'The eyes of the Lord run to and fro throughout the whole earth.'

She thought, 'Lord, You can see all these mountains. You know every stone and leaf, and You know exactly where my contact lens is. Please help me.'

Later, when they had hiked down the trail to the bottom of the cliff they met another party of climbers just starting up the face of the cliff. One of them shouted out, 'Hey, you guys! Anybody lose a contact lens?'

Well, that would be startling enough, but you know why the climber saw it? An ant was moving slowly across a twig on the face of the rock, carrying it!

The story doesn't end there. Brenda's father is a cartoonist. When she told him the incredible story of the ant, the prayer, and the contact lens, he drew a cartoon of an ant lugging that contact lens with the caption, 'Lord, I don't know why You want me to carry this thing. I can't eat it, and it's awfully heavy. But if this is what You want me to do, I'll carry it for You.'

I think it would do all of us some good to say, 'God, I don't know why You want me to carry this load. I can see no good in it and it's awfully heavy. But, if You want me to carry it, I will.'

Reading this story has helped me to remember that God has a purpose for all of us.....for me.....and even, or maybe even ESPECIALLY, for Gavin! I know this in my empty heart, but sometimes I forget to keep this in the forefront of my mind.

Every single day is truly difficult for me as I care for Gavin. But, I have to remember to rely on God's strength, and to trust in His plan! Because, even though my "load may be heavy", He has a reason for having me carry this blessed load!


Have you ever heard about a place/organization called Give Kids the World? Well, they have a resort in Florida that allows children who have life-threatening illnesses to go on a vacation of a lifetime! This is where our family will likely stay when we are able to take Gavin on his Make-A-Wish trip.

Today, if you visit your area Perkins restaurant, they are serving free pancakes to raise money for Give Kids the World. If you go in to eat at a Perkins restaurant today, you and your entire family will be given a free short stack of pancakes. They just ask that you consider donating to this great charity! So, on behalf of Gavin and other children like him, please consider eating at a Perkins restaurant today!


And finally, did you know that today is World Down Syndrome Day? Well, it is! In fact, every year on March 21, it is! They chose this particular day to try to educate the world about those who have Down syndrome, because it represents the number of Chromosomes a person with Down syndrome has. Normally, we have 46 Chromosomes in our DNA, with a pair of Chromosomes on each Chromosome.....but, most people with DS have an extra Chromosome on their 21st Chromosome, making them have 3, instead of 2. So, today's date (3/21) is used to represent the fact that there are 3 Chromosomes on their 21st Chromosome! Pretty cool huh?!

So many people seem to be afraid of those who have Down syndrome, and many seem to think that they aren't able to do what many people are capable of doing. This is FAR from the truth!.....(With the exception of a few like Gavin, who happens to have severe brain damage secondary to the stroke that he suffered.) Those with DS are quite capable! They are the same as everyone else, and they can learn to do most everything the typical person does, it just may take them a little bit longer to achieve their goals. They have feelings, emotions, love, and all of us do! And, those of us who are blessed to have someone who has DS in our lives know this truth!

In fact, some of us who have a special child, who happens to have Down syndrome, tend to think that we are more blessed than all of you who don't have a child like ours! Seriously! I personally know that I think that I'm really blessed to have Gavin in my life.....and you may find this to be a shocker, but I even want to adopt another child who has Ds! That's how blessed I feel to have a child with Down syndrome! I just wish that my child who has Ds didn't also have to have a stroke. :(

So, in spirit of this day, get to know someone who has Down syndrome.....if you put some effort into getting to know the REAL them, you will see what a gift they are to this world!

Here is Gavin wearing his "Nothing to see here, Just an extra Chromosome" shirt.

Don't you think that I'm very blessed to have this special guy in my life?

I mean.....just look at his smile!

This boy, who just happens to have an extra Chromosome.....and perhaps the best smile EVER, is seriously the light of my life!

"I can do all things through Christ who strengthens me." Philippians 4:13

Friday, March 18, 2011

My Home & Hands are Full, And Yet My Heart feels Empty

I'm surrounded by many. I have plenty of bodies to love, and to be loved by.

My home is filled with stuff....LOTS of it!

The basement is full of toys and full of such as; handicap seating, a stander, and a walker.

My cupboards and refrigerator are full of food.....but they are also full of plenty of medications, feeding supplies, wound care supplies, respiratory supplies and gastrointestinal tube supplies.

My garage is adequately filled with 2 vehicles for our use.....actually make that 3 means of transportation, when you add in Gavin's wheelchair.

My thoughts are full of God's glory and grace, and the knowledge that I'm loved by so many. But, my thoughts are also filled with so many worries and responsibilities.

My hands and life are TRULY FULL!

So, why does my heart feel so empty sometimes?

About 4 years ago, Gavin suffered a brain injury (stroke), that killed off many of the cells throughout his entire brain.

Gavin doesn't know this. In fact, Gavin has very few cares in this world.

But, I know it.

On that day that Gavin's brain was emptied of most of it's capabilities, my heart was also emptied. And, I struggle daily with the responsibility that I have each day because of this.

My heart hurts watching my 4 1/2 year old having to lay on the floor, unable to sit up on his own......unable to really play on his own.....unable to crawl.....unable to talk.....or to walk.

My hands and my mind are so very full.....full of heartache, that cannot be erased by this world. And, on more days than not, my eyes are filled with tears, as I care for my sweet boy.

Each day it's a struggle to get up in the morning.....knowing what my day holds for me and Gavin.

I just wish that he could learn to sit-up on his own! This one accomplishment would make our lives so much more bearable! Am I really asking for too much?!

None of you can possibly understand this life and the burdens it holds, unless you are living it along with me.

I know that here is SO MUCH for me to be thankful for! I am very blessed!

But, when your home and hands are as full as mine are.....unfortunately, your heart and your dreams also tend to feel so very empty.

And, all I can do to get through my days is to pray that God will give me the necessary strength.

This day can't come fast enough for me:

"And behold, I am coming quickly, and My reward is with Me, to give to every one according to his work." Revelation 22:12

"Surely I am coming quickly." Amen. Even so, come, Lord Jesus! The grace of our Lord Jesus Christ be with you all. Amen." Revelation 22:20

Thursday, March 10, 2011

Some Wishes Do Come True!

Do you ever think about what you would wish for if you were given one wish to make, and it would come true? I can think of lots of things that I would wish for.....but most of the things that I would wish for, would probably never come true. For example, one wish that I would love to come true is that Gavin could be healthy, able to walk and talk, and have a long and productive life. I would LOVE for this wish to come true! (Especially lately, since I've really been struggling with the life that has been given to Gavin and our family. Some days it's harder to accept this life than other days, and lately our situation has been a heavy burden to carry!) But, since this wish can't come true.....I am happy that there is an organization out there that grants wishes to families like ours!

The Make-A-Wish foundation of Michigan has granted a wish to Gavin, and to our family! Recently, two volunteers came over to our house to give Gavin this wishing box and a wishing wand, so that he could make his wish!

Since Gavin is unable to make a wish of his own, due to the fact that he can't speak, our family had to make a wish for him. We struggled with this decision. What would Gavin want?

The more I thought about it, and after talking with many people and the volunteers, we decided that Gavin wouldn't really wish for anything! Gavin is happy as long as he is with his family, and as long as he is feeling well! And, since there is no wish capable of making Gavin to always feel well, or a wish that could cure Gavin of of his heart disease, seizure disorder, lung disease, stroke, or low immunities.....the one wish that he would probably make is to have fun with his family!

Joel and I would have chosen for a ramp to be built for Gavin's wheelchair, or for a vehicle that would be more accessible for Gavin as he gets bigger.....but these types of wishes aren't available through we had to think of something fun instead! We actually felt guilty even making a wish, since Gavin won't get much out of the experience we are planning to have, but the volunteer reminded me that the wish was for the whole family. And, that M-A-W grants wishes to children who have a life-threatening illness....and this affects the entire family, so they want the whole family to gain happiness, knowing that raising a child like Gavin holds many hardships for all involved.

So, after much consideration..........

..........we chose to make a wish to go to Disney World!

And, we think that Gavin is happy with our decision!

Gavin loves to be with his family and he loves, what better place is there, than Disney?! I think that he will enjoy this time, and I'm quite confident that the rest of our family will as well! I've heard that they make everything easy for families that have special needs children.....and since going anywhere with a child like Gavin can be difficult, we are looking forward to a trip that we don't have to worry about all the little inconveniences that come from traveling with all of Gavin's gear!

"What do you mean all of my gear?! Why don't you tell them about how difficult it is to travel with my brothers?! They are the ones that cause all the chaos?!"

Gavin has a point here! :)

Whatever the case, we are all THRILLED with this opportunity, and we can't wait to find out when we are able to go!

Here is a picture of Gavin with his wish granters:

They were so nice and very helpful!

The uncertainty of living a life with a special needs child, especially one who has a life-threatening illness, can be a long road to travel. But, it is such a blessing that there are good people out there who understand the trials, and who want to help make this journey a more pleasant one! Thank you Make-A-Wish!!! We are so blessed to have your organization available to help brighten our lives!

"Make a joyful shout to the Lord, all you lands! Serve the Lord with gladness; come before His presence with singing. Know that the Lord, He is God; it is He who has made us, and not we ourselves, We are His people and the sheep of His pasture." Psalm 100:1-3

Wednesday, March 2, 2011

Help Spread the Word!

Today is a day that an organization has set aside to bring about awareness to the r-word. (retard or retarded) A group of people decided that they had heard enough of this condescending word, and got together to get the word out! Four and a half years ago, I probably wouldn't have even noticed that this day was going on. But, 4 1/2 years ago I was given a reason to notice.....That reason is Gavin.

I have never thought this word was appropriate, but now it sounds so very offensive to my ears! I see this word on Facebook. I hear it on T.V. And, I've even had people use it around me since Gavin has been born.

You may be thinking that this is just a word. But, when you love someone who has mental retardation, this word cuts straight to the heart!

Gavin can't help that he was born with this condition. And, Gavin can't change the fact that he had a massive stroke, which has left him with significant brain damage.

And, think about this:

Any of you could have a sibling or friend with this condition. If fact, any of you could become mentally retarded on your way home tomorrow, due to a car accident! How would this make you feel? Would you want people to say this word around you?!

If love could cure Gavin of this condition, he would have the smartest and fastest working brain around! He is loved without measure! And, just so you know....he has 3 older brothers who would protect him at all costs! So, watch out! :) They may fight and argue with each other, but Gavin is off limits! Some days I worry about the sensitivity that my older boys have for others, but then I see how they interact with Gavin, and my mind and heart are put to rest. Jacob has set others straight concerning the r-word, and this truly makes me proud!

Here is a video of a sister who loves her brother very much! She is helping to stand up for him and others, like Gavin. And, I know that my boys would do the same for Gavin! Won't you stand up and join the fight for Gavin, and others like him as well?

(Pause music on sidebar of this blog to hear video)

Also, if you ask me, I usually consider people who use the r-word to be quite unintelligent. It makes you sound uneducated, and I'm sure that no one wants to be thought of this way.

Plus, in case you are wondering.....Gavin's Momma might just turn into a great big Momma bear if she hears you use this word around her as well!

Consider yourself warned! :)

"Let the words of my mouth and the meditation of my heart be acceptable in Your sight, O Lord, my strength and my Redeemer." Psalm 19:14

Tuesday, March 1, 2011

Good Riddance February!

I am so happy to welcome March in! I'm really hoping that it's a better month to our family, than February has been! February flew by.....but, the saying that "Time flies when you are having fun" has nothing to do with it, because if you ask me, February has not been fun at all!

I realize that I have a bad attitude concerning February, but for our family, it has been a very trying month! I can probably count on one hand, the amount of days that everyone has been healthy in this household. And, the sicknesses we encountered were bad ones....especially for Gavin!

Last week I thought that we were over the hump, and that we'd get a breather for awhile, but Thursday night Gavin started coughing again....and he was coughing up blood!.....Lots of it! I was very worried! In fact, I almost fainted in the middle of the night, because I was so worried about him! I didn't know if we should bring him into the ER, or wait it out until morning to see his doctor. Joel said to wait it out, and I'm thankful we did, because I know they would have admitted him, and as it turns out, Gavin was diagnosed with Bronchitis.....which I learned, can cause you to cough up blood!

He was given a shot of Rocephin and put on more antibiotics. This has helped him a lot, but now we are dealing with the side effects of antibiotics.....diarrhea.....Lots of it!

You should have seen me yesterday. Gavin had a couple of huge blow outs....Nolan and Caleb are now calling Gavin, "The Volcano". Nice, huh?! Gavin needed 2 baths yesterday....and Gavin HATES baths, so it was a really fun day!

Our boys had off from school yesterday, and even though Gavin was still sick, we took them to see the Narnia movie. Guess when Gavin decided to do one of his volcanic eruptions?! Yep! While we were out!

Thankfully, I had brought a change of clothes and lots of wipes, in which I had to use EVERY LAST ONE OF! I was in the bathroom saying out loud that, "LIFE STINKS!".....and at that moment in time, it really did stink! I can laugh about it now, but seriously, it was BAD! Keep in mind that Gavin is too big for a changing table in public restrooms, he doesn't sit up or stand up, and poop was EVERWHERE....except his face and hair anyway, and that's questionable. I was sweating, and Gavin was screaming by the time everything was said and done!

I did think to take a picture of the mess, just to prove to everyone how bad it was, and to show how much I deserved a medal or something.....because who's going to believe how bad it was, I was the only one who had to clean up the mess! Our boys and Joel were thankful to be males yesterday, because this meant that they couldn't go into the ladies bathroom to help me.....although I seriously could have used some help! Just be thankful that I didn't have my camera with me, because I totally would have posted the picture on the blog today! :)

Anyway, February has not been a very good all!

I have been thinking about how absent I've been in life lately. I've been somewhat absent in blogging, and what I've posted has been mostly negative. I've been absent at church. I've been absent at functions. I've been absent in our other boys' lives. It has been rough! I feel like I'm in a foreign world when I get out, because I have been secluded so much lately....and I hate this feeling!

I've been consumed with getting myself healthy, and getting everyone else healthy as well. I've been very busy....and yet, nothing has gotten done! I've had lots of time to think though.....and here are some of the things that I have thought about:

I am not usually a complainer. I hate to complain. But lately, I seem to be doing a lot of complaining! And, this makes me feel very badly inside. Normally, I might have things to complain about, but I rarely complain....I just see no point in complaining. It is what it is....we can't always change the way things are, so why sit and complain about it to everyone?! But, like I said, this month I've been complaining! Normally, I might vent here on the blog, or occasionally vent to my mother, and of course, Joel gets his fair share of hearing me whine about things....but for the most part, I see no point in whining about every little thing!

And yet, I hear so many people complaining and whining about their lives! And, after this month of chaos and sickness.....I'm really tired of hearing it!!!

I have always tried to be a great listener. I have been there for numerous people in my life. I've listened to their troubles and have always been there for them. And, I've been happy to do this for others. Everyone needs someone that they can turn to....and I'm happy to be trusted to do this for people. But, guess what?! Sometimes I get tired of it! Since having Gavin, the calls have decreased.....I think because they know that I'm more busy. In fact, I feel like I've lost some people in my life, because I wasn't available to be there for them as much as I used to be. This hurts....but it's probably a good thing, because I really don't need the extra responsibility!

But, this doesn't mean that I don't hear my fair share of compaining from others. And, all of a sudden, probably because this month has been so trying on me, I just don't have the patience for petty issues any longer!

Let me sum it up this way:

-If you wake up in the morning, and you are not constantly NEEDED by are quite blessed!

-If you have a 4 1/2 year old child who can sit up on his are very blessed!

-If your child gets sick and you don't have to worry about whether or not they will need to be on oxygen, or need to go to the hospital, or have to watch them have seizure after are blessed!

-If you can run to the grocery store and just have your 4 year old climb into the car and walk beside you in the store, or sit up in the grocery are blessed!

-If you are having to go through the stress of potty training your child and it's not going well....just be thankful that your child will one day be potty trained.....because you are blessed!

-If you are having to force your child to eat certain things, because they are a picky eater.....just feel blessed that your child is able to eat by mouth!

-If your back and neck aren't always hurting you because you have to carry around your 30 pound child are blessed!

-If your child isn't stiff as a board, due to high tone, and you can easily sit them on your lap, without having to force them into a sitting position and keeping them in a sitting are blessed!

-If your child doesn't have 12 are bessed!

-If your child doesn't take numerous medictions each are blessed!

-If the doctors, nurses and pharmacists don't know your voice over the are blessed!

-If your child enjoys bathtime and can sit up in the bath, without needing a monsterous bathchair, that takes up a ton of space in your house, and if your child doesn't scream and fight you the whole time you are cleaning them are blessed!

-If you can watch your child play and enjoy are blessed!

-If your child can talk and are blessed!

-If your child was born are blessed!

-If your child doesn't gag, retch and spit up lots during the day, and you aren't worried about aspiration into the lungs causing are blessed!

-If your child didn't have a massive stroke at 6 months of age, and he has little chance of doing many of the things mentioned above.....YOU ARE BLESSED!

So, if you ever complain to me about your petty issues.....For many of you, I just want you to be aware that I will probably win the "who had the worst day award!" I'm here for you, but seriously.....there are worse things in life to complain about! (***This is not intended for anyone in particular, I just get so tired of hearing people, in general, complain about life so much!***)

WHEW! I feel much better now!

I do have to follow this with the message that I know that I AM VERY BLESSED as well! I have so much to be thankful for and I do not take these things for granted, because I know that life is a lot more fragile than a lot of people will ever know!

Also, I know that others have it WAY WORSE than I do! There are Mommas out there wishing that they could care for their child right now....but their child is no longer on this side of heaven. Plus, my family has a place to live, food to eat, family and friends who love us, and support us......and the list goes on and on!

I guess I'm just trying to help remind everyone how blessed you truly are! Don't take the "little" things for granted! There are always other people who are suffering more than you are! And, complaining all the time will get you nowhere! Life truly is GOOD! Sometimes it's all in how you make it out to be! Your mind is a powerful thing.....use it wisely, and with a thankful attitude. Be thankful if you are able to walk, talk and be of service to others! Be thankful if you aren't wondering where your next meal is coming from! Because, in our own ways, we are all very blessed!

And, be thankful if you are given the gift of caring for someone like Gavin.....because even though it is a TON of extra work and responsibilty, there are also many lessons to be learned and much love to be gained! Gavin has opened my eyes to so much, and I am very blessed that God chose me to care for him! And, I know that even though there are days that are extra tough, God will give me the strength to rise to the occasion.....somehow.....some way!

Now I'm off to one of Gavin's many doctors! Hopefully we get some good news!

"Blessed is he who considers the poor; the Lord will deliver him in time of trouble." Psalm 41:1